

Generation Hope is a documentary series in production that follows families, clinicians, and researchers on the front lines of gene therapy and genetic research. We document the real-world journeys of children and families living with Phelan-McDermid, Rett, STXBP1, and Angelman syndromes, while tracking the gene-therapy trials now underway as part of innovative healthcare solutions. Each family story is paired with deep, unfiltered conversations with the scientists and clinicians who are turning decades of research into potentially life-changing treatments.
We believe this generation of children could be the first to benefit from cures and transformative therapies for conditions once thought untreatable. Generation Hope explains the science in human terms, shows what progress looks like in lived experience, and provides a reliable resource for patients, clinicians, and supporters.

GenerationHope.co serves as a vital resource for families and researchers impacted by rare genetic disorders. We provide timely news, expert interviews, research summaries, and practical resources to help you stay informed about advances in genetic research and the healthcare solutions they offer for real lives. The website will also feat
GenerationHope.co serves as a vital resource for families and researchers impacted by rare genetic disorders. We provide timely news, expert interviews, research summaries, and practical resources to help you stay informed about advances in genetic research and the healthcare solutions they offer for real lives. The website will also feature a searchable knowledge base of everything discussed in the interviews, making this information accessible to the research community.

The Interview Series serves as a companion to our docuseries — a monthly program featuring long-form, unedited conversations with the pioneers shaping the future of genetic research and healthcare solutions. We engage with leading scientists, researchers, and advocates in Gene Therapy to explore their insights and contributions.

Generation Hope is a documentary series currently in production that follows families, clinicians, and researchers on the front lines of gene therapy. We document the real-world journeys of children and their families while exploring how genetic research is being transformed into effective healthcare solutions. Alongside these compelling
Generation Hope is a documentary series currently in production that follows families, clinicians, and researchers on the front lines of gene therapy. We document the real-world journeys of children and their families while exploring how genetic research is being transformed into effective healthcare solutions. Alongside these compelling stories, we feature deep, unfiltered conversations with the scientists and clinicians who are dedicated to turning decades of research into life-changing therapies.
Newborn genome sequencing isn’t science fiction anymore. It’s already changing which babies get diagnosed, when they get treated, and how many families spend years in diagnostic limbo. In this episode of GENEration Hope, I sit down with Dr. Wendy K. Chung—clinical and molecular geneticist, Chair of Pediatrics at Boston Children’s Hospital and Harvard Medical School, and Principal Investigator of the GUARDIAN newborn genome screening study. We talk about: • How whole-genome sequencing (gWGS) is changing newborn diagnosis • What the GUARDIAN study is finding in over 13,000 babies so far • Why Rett syndrome is far more common than we thought (around 1 in 1,500 girls) • The week she diagnosed a 72-year-old and a 3-week-old with Rett • The ethics of telling parents about serious conditions when babies still look “perfectly fine” • How families can “stand up and be counted” in registries so they’re not left out of future trials • Why early diagnosis is essential for gene-targeted therapies—and why timing may one day mean treating even before birth
In this wide-ranging interview, Dr. Alex Kolevzon (Mount Sinai) sits down to discuss the science, the trials, and the human side of gene therapy for rare neurodevelopmental disorders.
Monica Coenraads, founder and CEO of the Rett Syndrome Research Trust (RSRT), has led the charge to cure Rett Syndrome—raising over $123 million and driving multiple gene therapy programs now in clinical trials. In this in-depth conversation, Monica shares her personal journey from her daughter Chelsea’s diagnosis to building one of the world’s most impactful rare disease research organizations. She explains the evolution of Rett research—from the discovery of MECP2 to today’s cutting-edge genetic medicines including gene therapy, base and prime editing, and RNA trans-splicing.
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